Ethical Social and Legal Issues

Preventive approaches to congenital disorders always raise ethical problems, because traditionally the emphasis should be on treatment rather than on the avoidance of birth of children with congenital disorders, which is unfortunately unavailable for most genetic disorders at the present time. On the other hand, the most ethically acceptable preventive approaches are indeed those that involve the primary preventive measures, which are better tolerated by society, than the secondary preventive measures involving pregnancy termination. As described in Chapter 1, one of the best examples of the most efficient primary preventive measures may be a population-based fortification of the major foodstuffsbyfolic-acid-containingmul-tivitamins, which has been demonstrated to result in significant reduction of neural tube defects and congenital malformations overall. Still, such programs have been introduced only in a few populations, so the lack of similar preventive measures in most of communities maybe the reason that thousands of children with some of the congenital disorders continue to be born who otherwise might have been born healthy, which therefore may represent an important legal, social, and ethical issue. What is of special importance is that these primary preventive measures are ethically acceptable in any population, because they provide the actual gain in infants free of congenital malformations rather than the avoidance of birth of affected children.

The same is true for preimplantation genetic diagnosis (PGD), which is also a primary preventive measure, although applied on a family level, allowing genetically disadvantages couples to produce unaffected children of their own, who might not otherwise be born at all because of fear of these couples to reproduce and face prenatal diagnosis and termination of pregnancy [1, 2]. So any legal restrictions of these patients' choices may only force them to achieve their goal by traveling to the other countries where the regulations regarding PGD are more liberal. The most recent review on the status of PGD in different countries [38] showed that international legal practices range from explicit legalization (e.g., the Netherlands, United Kingdom, France, Spain) to more or less "lawless control" as in Belgium and the United States, to legal prohibition through restrictive laws as in Italy, Germany, Austria, and Switzerland. However, even in these countries, there is a tendency to ease such legal restrictions. For example, there is no interdiction of PGD in Austria, neither through the law on reproductive medicine, nor through the law on genetic engineering, unless the polar body or blastomere biopsy would be misinterpreted as "interference in the germ cell lineage," which wouldbe prohibited [7]. In France, PGD is under the control of CNMBRDP, which is a governmental commission also controlling IVF [4, 5]. According to the regulation, an agreement is required to perform the embryo biopsy and genetic/FISH testing, the evolution of which and indications being the subject for a follow-up by the representatives on a regular basis. Only a few centers in France are allowed to perform PGD for the initial five years, subject to renewal afterwards; the regulations are under the "ethical" law, requiring a forthcoming reexamination. Similarly, PGD in the United Kingdom is regulated by HFEA, which is also a governmental organization, which provides the license for performing PGD and also must approve any new condition for which it is

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